The Luxturna Debate: Why Ethics Needs a Seat at the Drug Pricing Table
Jack Hogan can now ride his bike home at dusk after an afternoon of playing with his friends. Is that childhood rite-of-passage worth $850,000?
Genetics & Genomics
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Read more: The Luxturna Debate: Why Ethics Needs a Seat at the Drug Pricing Table -
Read more: What’s the future of CRISPR gene editing technology? What’s the future of CRISPR gene editing technology?
Petrie-Flom Faculty Director Glenn Cohen discusses genome editing on Al Jazeera’s The Stream.
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Read more: Science and ethics experts still reeling from #CRISPRbabies fallout Science and ethics experts still reeling from #CRISPRbabies fallout
By Paul McLean Watching David Baltimore open the #GeneEdit Summit last week brought back a memory of the last time I saw the Nobel laureate in such a role. The 2015 #GeneEditSummit concluded with a Q&A about the summit’s statement — which many considered was a moratorium on gene editing of embryos. An audience member,…
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Read more: How Scott Gottlieb is Wrong on the Gene Edited Baby Debacle How Scott Gottlieb is Wrong on the Gene Edited Baby Debacle
Gottlieb’s comments on the news that gene edited embryos in China had led to live births were wrong.
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Read more: Anya Prince on Gene Therapy and Exacerbating Health Care Inequalities Anya Prince on Gene Therapy and Exacerbating Health Care Inequalities
By Alex Pearlman Anya Prince, a legal scholar and thought leader in the field of genetic discrimination, will present a new paper at Monday’s Health Law Workshop that interrogates whether gene therapies will exacerbate inequalities in health care, as more treatments enter the market. “Gene Therapy’s Field of Dreams: If You Build It, Will We Pay?”…
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Read more: Silver Spoons and Golden Genes: Designing Inequality? Silver Spoons and Golden Genes: Designing Inequality?
By Dov Fox A recent web series sparked controversy with the headline that “Designer babies aren’t futuristic. They’re already here.” The online articles make the case that disparate access to frozen embryo screening for debilitating diseases—sickle cell anemia, Tay-Sachs, or cystic fibrosis—is “designing inequality into our genes.” The authors are right that reproductive technology isn’t…
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Read more: You Received Genetic Test Results from Direct to Consumer Companies or from Research – Will Your Doctor Be Happy to See You? You Received Genetic Test Results from Direct to Consumer Companies or from Research – Will Your Doctor Be Happy to See You?
By Ellen W. Clayton You recently responded to a TV advertisement by a direct to consumer (DTC) genetic testing company because you wanted to find more of your relatives. The company also offered to send you your genomic data. Although not what you originally had in mind, you decided to send the data to another…
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Read more: Opportunities and challenges for user-generated licensing models in gene-editing Opportunities and challenges for user-generated licensing models in gene-editing
By Timo Minssen, Esther van Zimmeren & Jakob Wested An earlier version of this contribution had been published in Life Science Intellectual Property Review (LSIPR). A voluntary pool or clearinghouse model may give rise to a robust commercial ecosystem for CRISPR and could include special provisions for royalty-free research use by academics. Hence, there may be a path through…
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Read more: Will the EPO’s Enlarged Board of Appeal step into the CRISPR patent battle? Will the EPO’s Enlarged Board of Appeal step into the CRISPR patent battle?
By Jakob Wested, Timo Minssen & Esther van Zimmeren Another version of this contribution has been published in Life Science Intellectual Property Review (LSIPR). The Broad Institute is facing a formidable task in defending the revoked CRISPR patent claims in their pending appeal at the European Patent Office (EPO). Ultimately, some of the issues might still be referred…
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Read more: DNA Donors Must Demand Stronger Privacy Protection DNA Donors Must Demand Stronger Privacy Protection
By Mason Marks and Tiffany Li An earlier version of this article was published in STAT. The National Institutes of Health wants your DNA, and the DNA of one million other Americans, for an ambitious project called All of Us. Its goal — to “uncover paths toward delivering precision medicine” — is a good one….